Several years ago our family became acquainted with Gillette Hospital. Our son Robert was born under stressful conditions at St Paul Children's Hospital. He spend two weeks in their Neo Natal Intensive Care. There was no diagnosis, for his inability to suck and low muscle tone. We saw several specialists at Children's, including Neurologists and Endocrinologists, none had a definitive diagnosis. Robert, age three, began gaining weight at a rapid rate. At age five, we were told he probably had Prader-Willi Syndrome. According to research on the internet, people died of the syndrome at forty from complications of morbid obesity.
We heard about the Prader-Willi Syndrome clinic run by Gillette. I was sure a second opinion would give us the answers we were looking for. Something else was causing our son to gain weight and he did not have the syndrome.
On our first visit we were directed to height and weight, then taken to a clinic room. Clinic Nurse Carolyn Jones explained their routine. Dr M. Ainsli’e, an Endocrinologist, that ran the clinic, would see us first. Other specialists, a nutritionist and Phycologist would then consult. No other appointments would be necessary. Extraordinary news to a parent whose life had been spent organizing multiple appointments.
Our first visit with Dr. Ainslie was reassuring. He was a kind and caring man who included Robert in the conversation. We could learn to cope with the problems of today he assured us. I would depend on this advice. We would return to the clinic every three months, as Robert could be helped there.
A blood test confirmed Prader-Willi Syndrome at age seven. The support we received from the clinic helped us cope. Robert was given Growth Hormone injections, a new treatment for the syndrome. Growth Hormones helped him grow taller and gain more muscle mass, most people with PWS are quite small.
Robert developed scoliosis. Gillette was able to provide treatment. We began seeing Dr. Lonstein an orthopedic specialist. He recommended bracing, to delay surgery. The brace, manufactured at Gillette's Assisted Tecnology was vest-like in appearance, velcro straps in the back. Bracing delayed surgery for three years. A full spinal fusion surgery took place at age twelve. We were confident in our Doctor, but overwhelmed by the severity of the surgery. The severe curve was "S" shaped, ninety-seven degrees at the top, ninety-three degrees on the bottom.
The surgery was hugly successful. Robert never complained of pain, people with the syndrome are often oblivious to it. He was convinced, after hearing that there were screws in his spine that they needed to be removed. He would repeat this whenever we visited, perseveration, repeating an idea or word is also part of the syndrome.
Dr Ainslie, nutritionists, and an amazing phycologist Dr Constance McLoud helped keep us on track during the teen years The syndrome can become more difficult during puberty. At eighteen Robert became increasingly detached from reality and was hospitalized for mental illness. Gillette's clinic nurse Carolyn Jones was able to provide a resource. She suggested a group home called Stepping Out. Their program helped get him back on track.
Robert continued to be cared for at Gillette until his twenties. I recommend the PWS clinic to anyone who has a child with the syndrome. I don't know how we would have coped with this challenging syndrome without them.
Robert is now twenty-eight and engaged in life. His weight is low and he exercises daily. PWS clinic staff would be proud to see him speed walking and competing in 5K races. We still face challenges but as parent's we are no longer the "Bad Guys," day to day behaviors are handled by the staff at Stepping Out!